Pumped for the Future

By Cynthia Tully

May 30, 2013

It’s often said that type 1 diabetes (T1D) is a family disease because once one member is diagnosed the whole family quickly experiences a “new normal.” But as anyone affected by T1D knows—nothing is routine about this new normal. When Sydney Cohn was diagnosed with T1D on February 5, 2007, at the age of seven and a half, her parents, Lea and Matthew, knew little about T1D. They spent a week at Children’s Hospital of Philadelphia, learning to test Sydney’s blood glucose levels, to give her insulin injections, and to understand this was a chronic disease that would affect Sydney for the rest of her life.

The Cohns, who live in Villanova, PA, also discovered JDRF in 2007 and signed up for the Walk to Cure Diabetes at the Philadelphia Museum of Art that October. As Sydney’s SuperStars, the Cohns asked friends and family to join them in the fight against T1D by making a donation or walking and fundraising with them. Sydney, now 13, and her younger sister, Mackenzie, now 12, acted as team co-captains, and were thrilled when they raised more than $300,000 to help JDRF fund T1D research. The Cohn family has participated in the Walk every year since then. Their team has been the number-one family team in the country for six consecutive years—raising close to $2.5 million to date and undergoing a significant name change along the way.

Putting their own spin on the Walk

Sydney and Mackenzie are just 21 months apart in age. And on August 4, 2008, only 18 months after Sydney’s diagnosis, Mackenzie was diagnosed with T1D, also at the age of seven and a half. Lea says, “Sydney’s diagnosis was a complete and total shock. Then with Mackenzie, there was such extreme disappointment, because the second time you know what it means.” Matthew adds, “Even though we knew more about managing the disease, we also had more knowledge of the difficulties facing Mackenzie.”

Though scared, Mackenzie was also pragmatic. In the hospital shortly after her diagnosis, she asked her family, “What are we going to do about our Walk team? I’m going to have to have my own team.” Mackenzie formed Mackenzie’s Miracle Makers, and now both sisters’ teams comprise the CohnSisters Walk team. On Walk day, the fashion-forward young women have fun differentiating their teams with separate logos, different colored hats, and other accessories, but everyone who walks for the CohnSisters wears the same team T-shirt in a show of unity.

And what a show! The Cohns make it clear to family and friends that JDRF is the only cause they will ask them to support, and they ask everybody they can. Their team typically has more than 150 walkers each year, and hundreds of people donate to their effort. Even last October’s Superstorm Sandy didn’t dampen the CohnSisters team’s dedication and enthusiasm. More than 100 members turned out to walk and raised close to $300,000.

“Owning” T1D and making a difference

Fundraising for JDRF has given the sisters a sense of control over their T1D. This is important, according to Matthew, because as they grow “Sydney and Mackenzie will have to own this disease.” They have also felt empowered to speak up about their lives with T1D to help others. In 2009, both Sydney and Mackenzie served as delegates to JDRF’s Children’s Congress, a biennial gathering of children who live with T1D from all 50 U.S. states and across the globe. The delegates have face-to-face meetings with Members of Congress in Washington, DC, to discuss what life with diabetes is like and why funding research to find better treatments and a cure for T1D is so critical.

Matthew recommends asking people for more than they might think of giving for a “walk,” thanking them for their generosity, and keeping donors informed of JDRF’s progress. “Although it is a walk, the quest for a cure is a marathon, not a sprint. We want to keep everyone connected for the long run,” says Matthew, who serves on JDRF’s International Board of Directors. “People support our team because Sydney and Mackenzie inspire them with their bravery and ability to overcome the challenges of this disease. And because I can confidently tell them that JDRF is improving lives today while keeping us on a path to a cure.”

The Cohns view the Walk as an opportunity to make a difference in the future of the disease, but they also cherish the community they have found in JDRF. Lea says, “JDRF’s power is definitely in research and keeping us up on technology, but it’s also in making personal connections and giving a sense of hope.” In the early days of her diagnosis, Mackenzie had a fear of needles and had to be held down so her parents could prick her fingers for testing. At the next Walk, just a few months after her diagnosis, Mackenzie felt so surrounded by love and support that she told her mother, “Mom, I think I can do it myself this time.” And for the first time she tested her blood glucose on her own.

Celebrating research advances

While T1D is a family disease, it is also a very individualized disease. Lea describes day-to-day T1D management as “an art, not a perfect science.” Her daughters can eat the exact same meal at the exact same time, and an hour later one’s blood glucose level will be high and the other’s will be in range. “Their bodies react differently to all of the factors involved—they process food differently, use insulin differently, respond to exercise differently, and show very different signs of being high or low,” explains Matthew. The Cohns spend time educating the people who interact with their children, including teachers, school nurses, and coaches, on the constant vigilance and preparedness required of T1D. They view the Walk as one more way to raise awareness and educate people about T1D.

Today, Sydney and Mackenzie wear insulin pumps and use continuous glucose monitors to help manage their T1D. Lea and Matthew are grateful for the JDRF-funded research that helps make this technology possible and enables their daughters to lead active middle-school lives, full of sleepovers, sports, and creative pursuits. Matthew says, “Every time a new advance is announced, our family and friends know that they played a key role. And when the cure comes, they are going to know they helped make it happen. Who wouldn’t want to be part of that?”